Letters to the editor

Spencer Lay

August 3, 2013

The Lay family and Spencer would like to express our gratitude to all of those who gave Spencer his wish with Neal McCoy. Everyone worked together to give our son and our family a day he will never forget. It has been over a week and Spencer is continuing to watch the Jamboree in the Hills performance over and over again.

He loves to sleep with his American flag that Neal McCoy signed for him; he holds it close to his heart. We want everyone and Neal McCoy himself to know that he opened something up in Spencer that we have never seen before. This whole experience instilled a confidence in Spencer and he feels now that he matters to people; people want to listen to what he has to say.

To Spencer, this gift wasn't about meeting a celebrity; Spencer truly has a connection with Neal's music and performances. His music speaks to Spencer and it is amazing to witness. It takes a special person to really connect with Spencer and Neal is one of them. He is truly a genuine and thoughtful man as well as his family. As Spencer's family, our community and Neal gave us a gift of strength to move forward. The song he sang to Spencer, "A New Mountain To Climb", was just what we all needed to keep going. Knowing that Spencer and our family have the love and support of so many, we feel that this is the time to share Spencer's story....

Spencer's condition is a rare genetic abnormality, which is a terminal deletion in his 15th chromosome in the region of 26.2-26.3. There is no known syndrome with this particular deletion. He also has a duplication of 13 genes in chromosome 2 as well. The deletion and duplication are what have caused Spencer so many birth defects, many medical health challenges, and developmental delays. Spencer's extreme amount of medical challenges: Cardiac, IGF-1 insuffiency, a missing bone receptor, growth delay, submucas cleft palate, retina dystrophy, autonomic nerve dysfunction, tethered spinal cord and dysmorphic features, arthritis, severe middle ear disease, airway blockage, increased tone and muscle weakness, speech apraxia, velopharyngeal insuffiency, extropia dyphagia, ADHD, reflux, swallow delay, and oral motor insuffiencey. As you can see, Spencer has so many issues at one time to deal with and with more that keep arising it is hard to keep up with it all. Spencer is not a textbook case and it becomes confusing, as well as overwhelming, to focus on so many issues.

Because Spencer sees so many specialists, there is a lack of communication among his specialists which leaves Spencer's case at a standstill. We constantly have to remind them about his abnormality and that you can't rely on text books with him. Spencer's body doesn't run as everyone else's and you have to think outside of the box. There are many times Spencer is treated by his size not his age. Even his own physicians do this which causes him to completely shut down. It is heart breaking to watch. Spencer is aware and understands everything, even though his expressive language is behind, due to one of his challenges. If you take the time and are patient he will use all his power and skills to tell you everything, don't count him out.

After twelve years, he has a story to tell and God gave Spencer's life a purpose. We believe everything happens for a reason and you cross paths with people throughout your life for a reason. We feel that through this amazing experience that Spencer was given, we could finally find the missing pieces to connect Spencer's medical puzzle together. Science and technology have come so far and we all read about so many challenging medical cases for people and the help they are receiving. Spencer deserves his chance; he shouldn't have to live each day in the dark anymore. As our family looks back over the years, we remember being asked by a group of physicians, "Do you want his feeding tube placed? Think of the rest of your lives..." If we did not have the feeding tube placed he would have starved to death and they couldn't even tell us what was wrong with him or answer our questions. God made him the fighter he is today and with God's Grace his feeding tube was removed at the age of 4. If the same physicians that told us to take him home and enjoy him while we still could, could see him now, they would be amazed at the miracle looking right back at them!

Spencer has so much determination in life that you can't imagine. Everything they said he would not do in life, he has done and more. This amazing gift of Spencer's wish last week could be the miracle we needed to get the word out there about his condition and receive the medical attention he deserves. We aren't asking anyone to contact celebrities, physicians, etc.... All we are asking is to please "like" or "share" this story to see if Spencer's story will reach another angel that could answer the medical uncertainties that our family and Spencer live with each and everyday of his life..... To all those who have given Spencer and our family love, support and your prayers we sincerely thank you from the bottom of our hearts.